Recently I revealed to a friend of mine that I have multiple sclerosis, and she chided me. “Why haven’t you written about this? You write about everything else – why not this?”
I dissembled and made excuses – no good. She came back at me. “Look, there are people out there who’d want to hear about it,” she said. “About how you were able to keep going and accomplish things despite the M.S. It would be an encouragement to them.”
That got me thinking, and I had to admit that I would’ve been encouraged to read something truthful and positive back when I was diagnosed. So here goes – a brief introduction to how I’ve come to terms with my chronic illness. It’s an ongoing story in three parts, and I associate each part with three casual remarks made to me by physicians.
1. “You’ll want to get air-conditioning in your truck.”
I was barely out of college, a new Catholic, and bent on rescuing the Church by becoming a priest. It seemed like an obvious arc: I was male, single, and enthusiastically devout; the Church needed priests; I wanted to be a priest. What could be simpler?
Then my vision got funny – a simple course of steroids took care of that. Next came the numbness and tingling – a chiropractor assured me I just needed realigning. But the foot drop and stumbles spooked me, so I went to a neurologist.
And I did it on my own. I didn’t tell my parents. I didn’t tell my friends. I don’t think I even prayed about it. “This is just some weird fluke,” I told myself as I drove down to Denver for the MRI. “It’ll go away – nothing to worry about.” I remember joking around with the radiology tech. She didn’t joke back.
No doubt it was because she saw what the neurologist herself later saw. “See these white patches?” She was pointing at an illuminated scan at my follow-up appointment. “They’re called plaques – areas where the insulation around your nerves are breaking down. It looks like you have multiple sclerosis.”
I was stunned. Speechless. Multiple sclerosis? It was one of those diseases that they do fundraising appeals for, that celebrities do telethons for. It wasn’t a disease anybody actually got, least of all me.
After a moment, I spoke up. “What do I do now?”
“Do you have air conditioning in your vehicle?” It was an unusually hot Colorado summer.
“You’ll want to get that,” she said. “M.S. is exacerbated by heat.”
I’m sure she said more than that, but it’s all I remember. Pretty blunt, I know, but very practical, and there really wasn’t much else for her to tell me at the time. It would be another eight years before there were drugs approved for long-term M.S. treatment.
Besides, practical is appropriate at the first stage of this kind of coping. A fight or flight response kicks in, and you need information in order to fight – information on what the disease is all about, what’s possible in terms of management and/or cure, and what’s realistic in terms of prognosis.
2. “You can’t let it be a monkey on your back.”
Practical adjustment alone, however, isn’t good enough – at least, it wasn’t good enough for me. Deep inside, I decided I couldn’t have M.S. It would screw up my plans and derail my priestly trajectory. Hoping for a corrected and more optimistic assessment, I went to a specialty clinic for a second opinion. They perused my scans, took my history, and gave me a physical exam. “I have to agree with your diagnosis,” said the doc. “It does look like you have M.S.”
I burst into tears. “Now I’ll never get to seminary,” I sobbed. “I’ll never become a priest.”
“That’s not true,” the physician objected, shaking his head. “People with M.S. do all kinds of things. You can’t let this be a monkey on your back.”
He meant well, but his words fell flat. I didn’t – couldn’t – believe him. I was young and eager to launch, and I’d read up enough on M.S. to know that it was chronic and incurable. Even when it’s in remission, it’s always there in the background, ready to pounce and disable without warning. The monkey was always going to be there, taking a psychological toll if not a physical one.
This is the stage of rapidly tripping through Kübler-Ross’s stages – from denial to acceptance. The middle anger stage is key. “Why me?” I used to pray. “I’m all set to be a priest for you, and you dealt me this hand?” That sounds childish and presumptuous, I know, but it was real, and honest anger at God is cathartic.
Kübler-Ross’s stages, however, have an endpoint – death – whereas chronic illness, by definition, doesn’t. It’s like a tutorial foretaste of death that just keeps repeating, over and over and over. “I get it now, God,” you say eventually. “I’m fragile, life is short, and I need to do what I can. I get it.” You wake up the next day, and you still have the illness, you still have the deficits and struggles, you’re still sick – and you make plans for the day anyway.
I’ve come to reframe that second-opinion doctor’s advice: The monkey will always be there, but it can’t control my life. For one thing, there’s no telling how chronic illnesses will progress – sometimes gently, sometimes not. Happily, to date, my own M.S. monkey has been rather tame. I’ve had some major setbacks over the years, but I’ve always gotten back to my baseline. Sure, I often struggle with fatigue, but is it the M.S. or the weird hours I work as a healthcare worker – who knows?
The bottom line is that chronic illness offers no guarantees about anything, good or bad. That’s why I was blown away when the wonderful woman who got me rethinking my vocation didn’t balk at my scary diagnosis. “If you get sick,” I remember Nancy saying when I spelled it out for her, “I’ll just take care of you.”
In other words, that monkey on my back may become unmanageable, but that might just require a change in what I mean by “manageable” – especially if I delude myself that I can go it alone. Dealing with chronic illness has to be communal effort –family, friends, neighbors. American-style autonomy and siloing won’t cut it.
3. “You’re not going to get off that easy.”
So, Nancy and I married, and God blessed us with a family. We moved to Indiana and, on a lark, I went to nursing school – nursing school! Several years (and kids) later, I started working evening shift as an RN, and then we attempted to sell a house and buy a house at the same time. The stress of all that probably precipitated my first real relapse in 25 years. My vision got weird, the numbness and tingling returned, and I started to stumble again – both on my feet and in my speech. I took a medical leave and went to a new neurologist.
In Dr. Gable’s office, in front of my wife, I fell apart. I had a family and responsibilities, and all seemed lost. “What am I going to do?” I pleaded. “I won’t be able to work – I won’t be able to support my family.”
“Oh, you’re not going to get off that easy,” Dr. Gable said with a grin.
He told me that a round of intravenous steroids would get me back on my feet. Plus, M.S. treatment had greatly advanced since my diagnosis, and Dr. Gable suggested I try one to reduce the severity and frequency of exacerbations. I’ve been on it ever since, and, sure enough, Dr. Gable was right. I still have relapses from time to time, I’m still fatigued, but no lounging around, no indulging in self-pity for me. Nope, I have work to do.
But what if things hadn’t worked out that way? What if I’d become truly disabled? What if I become disabled now? Dr. Gable’s exhortation stands: I’d still have work to do, and it’s related to what St. Paul wrote the Colossians: “Now I rejoice in my sufferings for your sake, and in my flesh I complete what is lacking in Christ’s afflictions for the sake of his body, that is, the church.”
I want to be careful here and avoid spiritually sugarcoating the agonies of disability and suffering. The fact is, however, that suffering, in varying degrees, is unavoidable for all of us – it’s part of the human condition – and we Christians believe it can have a purpose. It’s something we mustbelieve because of the Cross. “Paul has restated the problem of pain,” writes Frank Sheed of that Colossians passage, “not how to avoid it but, given that all will have their share of it, how not to waste it, how to make use of it. If we are willing to offer it to Christ for linking with his own suffering, it can be salvation-bringing.”
And that’s the ongoing part of my M.S. story and the most hopeful one. When I’m grappling with a relapse – or the anxiety that crops up between relapses – I can do more than just endure. “To the extent that Christ’s suffering becomes my suffering,” Dom Hubert writes, “my suffering becomes a prayer” – a prayer of worship and union, a prayer of intercession for family, Church, the world. “From being personal it can become universal and vicarious,” and, in its chronic form, it can become a continuing education in cruciform capitulation – a series of opportunities to surrender to Christ.
I’m not grateful for my illness, but I’m glad I have the rest of my life to get better at making good use of it. Pray God that I do so. I’ll pray the same for you.